As she faces losing her sight, 11-year-old raises thousands of dollars for a cure

She's only 11 years old, but Lilly Diuble is already an expert fundraiser, bringing in $100,000 for the Foundation Fighting Blindness. As someone with Usher syndrome, it's a cause close to her heart.

Usher syndrome is a rare degenerative disease that causes blindness and deafness. When she was diagnosed, it devastated her family. "It's pretty hard to talk about," Lilly's mother, Angela Diuble, told NBC News. "When you have a baby, you plan this wonderful life for them and things just don't end up that way sometimes..."

Usher syndrome hasn't slowed Lilly down. In the second grade, she raised $16,000 for the Foundation Fighting Blindness' VisionWalk, and she has raised a total of $100,000 over the past five years. Lilly has also made a bucket list of places she wants to see while she still can, and has visited the Grand Canyon, Washington, D.C., and Disney World. The Eiffel Tower, Golden Gate Bridge, and Statue of Liberty are next on her list. "Some people don't get to see that kind of stuff so I thought it would be cool if I got to see it and explain to them how it looks and what it's like," she said. --Catherine Garcia

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